My MS Truth

I have been accused by another twitter member of being sarcastic in my response to a question on twitter and then given a lecture about how I should be more caring towards new MS suffers, well I really don’t see it that way. I had the below ready as a backup if I couldn’t manage a new post at any time, but what is says seems right for now, I have changed the odd word or phrase but otherwise it is as it was written. Please read and maybe think a little.

I have had from the age of 20 been told and told again that there was nothing wrong with me that it was all in my head, at best that it was all being caused by stress. all of which is clearly written in detail in previous posts. Once I got my diagnosis I then had years of being told that it might not be that bad and not to worry just to wait and see. So for the best part of 30 years I have heard nothing but flowery lies. MS is brutal and I really can’t stand the idea of other still being lied to. It is a horrid nasty debilitating illness that at its worst will wreck your life.

Living with MS has nothing to do with being positive and fighting it. MS has everything to do with getting to know your MS and I have never tried to write about anyone else’s MS. My MS has stolen most of my life; all I have left is my husband, my daughter, my home, my cigarettes and a Gin in the evenings. My days are spent in constant pain, constantly exhausted and unable to do anything that I want to. I have nothing left of who I was, that person is long dead and gone, killed by MS. I spend every day alone with the company of my husband when he is here. I speak to no one, see no one, and go nowhere. Thanks to my MS I find walking painful and tiring after only a few steps, so I sit here at my PC all day as there is nothing else I can do. When I do stand to fetch myself something I either wet or shit myself, often both so I am forced into take even more painful steps so I can clean myself up again, then just to be even more annoying, a few hours later I have to stick a tube into myself as my bladder won’t empty. The damage to my vagus nerve has taken away my control of my bodily functions and even plays with my heart causing even more falls and tumbles, always a danger when not seated. I can’t use a manual wheelchair as I don’t have the strength and an electric one wouldn’t get me round the house as there is no space, with no money, no choice in where we live. So I sit here, with spasms in my legs and arms driving me nuts all day, slowly gathering fluid in my legs and feet, stretching the skin until shinny and painful, pitting at the slightest touch, gaining weight due to lack of exercise.

My memory gets scrambled and my speech distorted, stringing words together and getting them out vocally is a nightmare at times, but I try. My hands don’t obey me, twitching and shacking when they are asked to talk for me, producing frustrating results on a keyboard, my eyesight assisting in the process by distorting the key positions. I sleep for more hours of the day than I am awake and that is the greatest blessing as at least when asleep I don’t have to put with the hell that MY MS is.

I have been asked if I am bitter about having MS and the answer is no. The only thing I am bitter about is the lies and rubbish I was told all those years ago. I wish someone had sat me down and told me that all of the things I have laid out here, that they didn’t try and pretend that everything would be alright, I wish I had known any of this but no one told me. If I had known I could have prepared better, moved house before we couldn’t afford to. If I had known, I would have been able to mentally prepare and made the whole horrid thing easier. Not knowing what can happen made me doubt what did happen, after all it was only a few years ago it was all in my head.

I believe that every single person who is diagnosed with MS should be told this, they should be handed a leaflet spelling it out in black and white just what can happen. I still keep asking what next and even now they won’t tell me, I know MS is individual but I want and I think everyone should be told the worst case scenario, just in case. Prepare for the worst you can only be pleasantly surprised when it doesn’t happen. I don’t believe in pussy footing around, be direct, tell the world loudly that MS is hell on earth and you should be prepared as it can hit you from nowhere, it can destroy everything that you hold dear and if it can, it will.

The only thing that I am thankful to MS for is it has taught me who I really am and that I am a person who has a love for my world and my life and everything in it and I am proud of who I am and I will not for anyone turn into a sweet little mouse, I am me and MS is part of me. So if you don’t like it then you don’t like the truth.

Zombie Summer

Yesterday was a slow knock out by sunshine, Summer time has always been mixed blessings even long before I had my diagnosis, I avoid the Sun, inside somewhere I knew that it made me ill. I have never been a fan of the tanned skin look but it went deeper than that, I found myself always trying hard to stay out of the direct heat. Any shade was welcome and I always saute it out, going as far as crossing roads and walking down the shady side of the street even when my destination was in the sunlit side. Like many thing when I now look back on them, the reasons that I convinced myself were correct at the time, was wrong, I can now see how my brain was just trying to make sense of what was happening. I think I told people that I didn’t want to tan my skin because it was easier than trying to explain that if I went into the sunlight at all I would be ill. Everyone else saw the Summer heat as invigorating and something so wonderful that it had to be worshiped for it’s life giving energy, I was the only one who seemed to think the opposite.

I started yesterday like anyone else, on seeing the sun was shining in a wonderfully blue speckled sky my spirits were lifted. Slowly the heat rose and slowly I became tired, drained of not only the lift it had given me but also my normal life energy. As the hours went by my brain filled with the well known MS fog which thickened and thickened, I found my old friend the zombie and gave up. For all the joy that the sun brings to those around me am glad to see the Summer arrive, personally I look froward to the return of our wet grey drizzle Winters. I have been told several times that it is the heat of the Summer which upsets MS but I find that a little hard to grasp as during the Winter if you turned my central heating down or opened a window, I’d kill you. If it was heat them surely in the winter I should embrace and enjoy the cold, but I don’t, I like to think of myself as a rare and delicate orchid, that has to be carefully kept at just the right temperature, humidity, light and well out of drafts.

My body and brain are drained already if I am honest and it is only 11:30 in the morning, four hours since I got up. The wonderful Summer for most and a numb fuzzy wipe-out for those who share this wonderful condition.